Opting Out: Who’s Protecting Human Research Subjects Online?

by Anita Pascoe, MS, CIP, project coordinator at Intermountain Healthcare

Time has flown by since December’s 2014 AER Conference. The holidays came and went, and, believe it or not, spring has announced its extremely premature arrival here in Salt Lake City. Two months post-conference, I am, however, still contemplating several of the key themes discussed during the four days in Baltimore. Topping my list of memorable conference moments is John Wilbanks’ keynote address, which hit home for me on a personal as well as a professional level.
Wilbanks noted that the nature of our global research enterprise has forever been altered because of the widespread use of mobile technologies, which enable easy and inexpensive access to myriad amounts of data. PRIM&R as a whole clearly agreed, as several other conference sessions were dedicated specifically to addressing issues related to the exponential growth of real-life, real-time data collection enabled by mobile technologies.
One of Wilbanks’ most poignant points, however, was his description of how our contemporary culture endorses the practice of blindly clicking “I agree” or “OK” to online user agreements or disclosure documents without reading so much as a single word. Hence, Wilbanks concluded, cheap data amassed daily by modern technologies intersects with efforts to protect consumers from potential risks and harms, which in turn also ends up being a concern for researchers.
As I mentioned in one of my posts during the conference, I recently acquired my first smartphone. Wilbanks’ remarks therefore had particular impact on me. I had never focused any personal attention on the phenomenon of “blindly agreeing” online. Now, smartphone in hand and fresh from the 2014 AER Conference, I decided I would pay attention to offers and requests I received to see if the problem really is as widespread as Wilbanks claimed. Since then (early December), I have received and accounted for 198 invitations to download free apps, 102 games, and hundreds of commercial solicitations, coupon offers and “specials.” I am simply stunned by the sheer volume of unsolicited “stuff” that comes my way every day. When did I consent to receiving any of it? I haven’t a clue.
From an institutional review board perspective, informed consent is a pillar of a human research protections framework. If, as Wilbanks suggested, our current data protection infrastructure is indeed no longer efficient or adequate in this era of online apps and big-data, how can we retool, restructure, and revamp our current practices to better fit our current situation?
I am personally favoring the notion of going back to using a “dumb phone” to stop the incessant bombardment of data. But I know the suggestion of rolling back technological advances like some anti-Internet Luddite is not the answer. My tech savvy son says I just need to “delete some junk, change my preferences, and set my filters.” That might be the answer for my phone, but who and what is out there to protect potential human research subjects in a world where the default is now “opt in” not “opt out?”